Sunday, July 14, 2013

Clean Scans

Lily had her MRI's and CT last Monday. As soon as it went up on the calendar, preparations begin. Lily talked about how the dart hurts. And she still feels the IV go in, but she feels weird. I let her know that just getting the IV is an option. She is understandably distressed as she has had several bad experiences. Sometimes I am baffled by her, considering she was practically sliced in half and had a huge chunk of calf removed - in comparison a poke is pretty minor. But then I remember that to monkey is only 8. Most 8 year olds have limited experience with any of it and 8 year olds are not considered with the relative pain scale- they are concerned with pain and any needle- no matter the purpose is pain. Lily is logical. I remember when Phillip was little- he didn't respond to time outs as much as if you sat him down and reasoned with him. The key with Lily is timing- if you broach a subject too soon- the OCD kicks in and she obsesses for a long time and the issue becomes larger than it needs to be. Not enough time, she can't prepare herself and fit it into her view of how things work. So I've learned to ask her questions and let her figure it out.  So I ask her what's the worst part about the MRI? The poke. Ok- we can't get rid of the poke- but what can we do to make it quicker? Well the one time they poked me like 5 times and it hurt a lot. Yes and we WILL NOT let that happen again- I have made that clear- I talked to the nurses and they know you are not a pin cushion. What's a pin cushion? Clearly mommy has not had much time available for sewing lately- a thing that holds pins. Like the red ball thing? Exactly. I don't want to be that. So what if you just get the IV- then you don't have 2 pokes? But what if they don't get it? That could happen. But remember the pokes are quick and what if they do get it the 1st time- then it's only one poke. If you get the dart then there has to be another poke for the IV. Hmmm. I don't know. It's Ok, you can decide when you get there. What if they don't listen? That's why I'm there, to make sure they listen. Ok.

2 days before- Lily starts eating like she's going into hibernation for the winter. Lily likes food, a lot. Like her momma. All in preparation for the fact that she will miss breakfast. Looking at Lily- anyone would find it tough to believe she's ever missed a meal. Talking to Lily- conversation reverts to either what we are eating, what we have eaten and usually what we will eat next. I come from a long line of stress eaters- my dad most famously buying out an entire supply of bake sale goods the day of my brother's brain surgery- piling plates on the shelf of the payphone in the hospital lobby and alternating between work calls and update calls to family. It is not lost on my that cortisol and stress are inextricably linked and the stress hormone that it is signals the body to hunker down and keep stores in reserve- they might be needed. It's all related.

The night before- Phil announces he will take Lily in and then go into work. Lily hasn't prepared for this, it can go either way. She has a moment of stress and we tell her it's daddy's turn and that I will meet her there. That helps. Except when I walk downstairs the next morning- she is unshowered, in a robe and pacing. Dad said I could wear pajamas.  I look at Phil, who is gulping down an egg and coffee as their departure time nears. I don't eat in front of Lily on scan days- nor do I talk about food- she usually talks about it enough for both of us. We don't wear pajamas to MRIs unless they are at night. He shrugs- we both know we pick our battles. I tell Lily that she can wear pajamas- but we do not go out in public with pajamas on, which means she would have to come home for lunch. Lily doesn't move fast- but she is upstairs and back in yesterday's clothes and her robe before I can blink. Pick your battles- they are out the door and I get to work on the mountain of laundry. I also have to download all of Phillip's blood sugars- email them to the doc then print them out and go over them with him. The printer is not working- I spend an hour trying to clean the printhead- manage to get a spotty printout and look at the clock- it's time for me to relieve Phil at the hospital. Hopefully Lily is done, we can hi-5 and get on with the day. I love that he is my partner in all this. He works so hard and then tries even harder to reduce my work loads. Half the time I get pissy about things not being done my way, just because there is not a lot more I can complain about where he is concerned. I think he knows that- I hope he does. I still wonder how I lucked out with him and the funny thing is he says it right back to me- so I guess we are really just the perfect match. He sends me text updates- Lily got an IV and did great.

I beat Lily back to the sedation center- knowing if I head to radiology to find Phil- I might miss them. I catch up with the staff and one of whom we haven't seen in awhile- although with the sporadic schedule we keep- we don't always see some of the old regulars. As it turns out- she had a baby since we had seen her last- which is kind of a good feeling- I know I feel bad that I missed 9+ months in her life- but in the same respect- it means our routine has been better and we haven't been there as much. I usually tell the staff that as we leave- I hope we don't see you here for a long time- it's not because we don't like to visit with you.  They regale me with the story of how Lily stated matter of fact that she did not want the dart- she just wanted the IV and that's it. They all know Lily is a tough stick up there- not because she screams or throws a fit- but because her veins are just tough- add the steroid puffy and it's not a good time for anyone. They tell me how much they appreciate her preparedness. I find that to be ironic- and a little funny. But considering we have been doing this every few months for years and had yet another breakthrough- I will accept the progress. I know very well a bad stick could set us back a year- so I'm glad it went well. 

Lily arrives with Phil in tow- hugging him is like cuddling with a popsicle and he tries to steal my warmth- I can't believe you sit there and shiver all the time- it's miserable. The funny thing is I know it's cold down there- but my body temperature rises when I get stressed- so it usually cancels it out. Lily begins her I want to go home chant and begins taking inventory of all the wires and plugs and notices she is sans pants. This does NOT please her.  She alternates between wanting pants, having to pee, trying to sit up( a 104 pound projectile of sorts and the reason those big bars are on hospital beds) and crying about how brave she was that not a single tear escaped- as all those pent up tears run down her chubby cheeks. Phil and I laugh- now she's mad at us for laughing. It's always fun and I'm glad to have Phil there- it's not often we get to handle these things side by side and it's just nice to have him there. Lily starts to get agitated about the wires and holds up the pulse ox- I as always- say Lily Phone home? She hears Lily go home and the chant starts again. She remembers the red light on her index finger- what is this for??? She mumbles. Phil is a little rusty on sedated lily speak- so I translate and answer. Somewhere along the line my brain is forgetting to communicate with my mouth and I realize that I just explained the pulse oximeter helps them keep an eye on her blood glucose level. Phil laughs- wrong kid! I mean it monitors the oxygen in your blood. She doesn't care- she wants to go home- We catch projectile Lily again.

The sedation starts to wear off and I go to get the car- I have the fortune of getting to take Lily to lunch and snuggle with her on the couch while Phil still will put in a full day of work. I am grateful beyond words for him.  He tucks her into her seat, we wave goodbye and head to where else- Panda Express.
You are guided by silent love and friendship around you.

I have to say alot of times the love and friendship is silent. I understand that- as I reflect on all of the times I think of my dear friends and send positive wishes- yet am unable to collect the minutes to pick up the phone and call or even send a text.  At these times I am always comforted by the well wishes and thoughts of friends who take the time to share their positive energy with us on these tough days. It helps and is appreciated. Days later we had Lily's endocrine appointment and were lucky enough to bump into her oncologist. We got the all clear! No sign of tumor or metastases at this point. I take a big sigh. I feel like we are always waiting for bad news- at times it is just easier to prepare yourself for the worst. I know the road ahead is not going to be easy- but we will gladly accept an uneventful journey for as long as we can manage it.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)